Thirty Six Balloons

 

 

Family and friends gathered on August 10 to share the ways that Colby's 36 weeks of life impacted their worlds...in some cases changing them forever. He brought us together in ways none of us expected, united in our hopes and prayers and now in our sorrow. What an outpouring of love!


We watched with tears and smiles mingled as Jason and Amanda snipped the cords on 36 balloons, releasing them to soar up into the heavens. One balloon for each week of Colby's time with them...a gift and a letting go.

For Colby...forever in our hearts and one day face to face.

Farewell Colby

The past few months have been marked by so many indications of God’s care and provision in the midst of this intense struggle. The kindness of a neighbour willing to help if the need should arise in the middle of the night…a midwife willing to attend the birth as a bystander just so that Jason and Amanda would have a familiar face present…peace that could only come from God…a word of encouragement when it was needed most.  There have been moments to treasure. The first time Amanda felt Colby do a complete flip was a surprise and a wonder…his flurry of activity whenever she ate ice cream…the sight of him practicing his breathing during an ultrasound…such small things and yet every one of them significant because of knowing that every day might be his last.

When we made it through till the end of July and Colby reached the 36 week mark we were so proud of him. There was an ultrasound booked for the morning of August 1^st and we were all anxious to see how he was doing.  Amanda was accustomed to him making his presence felt just as she was falling asleep every night and the night of July 31^st was no different. She didn’t know that flutter of movement she felt as she lay down would be his goodbye. At some time during the night, Colby went home to be with the Lord, born straight into the arms of Jesus without having to experience the trauma of labour and delivery.  The complete healing we were praying for is his now and we can’t feel sad for his sake. It’s our loss that we grieve. 

Colby’s short life reminded me of something that I hope stays with me forever. Our bodies are not the sum total of who we are.  Colby’s body may have let him down but he was fully alive in his spirit.  I believe he experienced the love that we felt for him. I believe he recognized our voices and was comforted by them. I believe he knew God. We don’t know what he might have been like if we’d been able to watch him grow up but I can make a guess or two.  Judging by his footprints, especially knowing just how small he was, I think he would have been tall like his father…and I think he would have loved ice cream as much as his mother does.

 

 

Hope Springs

We dwell in a kind of expectant hush...almost holding our breaths whenever we think of what is coming. I feel my pulse quicken each morning as I ask myself if this will be the day.

Baby Colby has now reached 35 weeks gestation and we are beginning to hope that he will make it to full term. It's a tentative hope but there are definite stirrings of optimism. Amanda's blood pressure remains normal and there have been no signs of imminent labour. We struggle to maintain normal routines in the midst of this waiting. It is hard with so many question marks still to be faced.

There is another ultrasound booked for the first of August if we make it that far. That will give us a picture of his position and size so that the doctors and the neonatal team will have an idea of what to expect at his birth. Of course we are hoping that the ultrasound will show that he has grown more than expected. Every extra ounce will make a difference to his chances of survival.

This grandson of mine holds such a special place in my heart. The longing to see him and hold him and whisper love into his tiny ears catches me unawares at odd times of the day. It squeezes my heart till my eyes bleed tears.

Soon now, baby boy....soon.

Colby's Story Continues

None of us knows the end of this story but we continue on, one day at a time. We hope, we pray, we do a little crying from time to time, and we keep coming back to the arms of our Heavenly Father to declare our trust in Him and have our strength renewed and our peace restored...

July 7, 2013

Amanda went in for her latest check up with Colby so here is a little update.  First off, the doctor was surprised that Amanda had not given birth yet and that Colby was still hanging on. We are at 33 weeks! Apparently there was some trouble finding his heart beat, but during the search, Colby decided to fight back and started kicking, thus relieving the tension a little.  Eventually, we heard it, strong and steady. Amanda's health seems to be ok as well.

During this time, God has been showing me the depths of His peace and that, in this situation, He has given it specifically as a way of coping with something that is too big for me to handle.  There have been many stressful times in my life where I have felt peace that doesn't make any sense.  Amanda can attest to this as I am pretty sure my calmness sometimes makes her wonder if I am taking things seriously or not. 

Right now though, my experience is very different.  This is by far the most stressful and consequential situation I have ever encountered and I have seen how hard despair can fight back as the war rages in your mind.  That being said, I can literally feel a peace residing in me next to the place that harbours my fears for Colby.   This started last Sunday and is so much more focused than the almost generic feeling of peace I feel over hard situations.  There is no explaining or adequately describing the feeling, but with it comes the assurance that I can take hold of that peace and place it over my situation.  Choosing to accept this peace has had a very profound effect.  I feel more emotionally rested than I have in a long time and I am comfortable waiting on God's next move. 

For those of you who have been praying for us, this is very much a tangible answer to prayer.  This is going to the final round and the peace that I feel tells me someone much bigger and more capable is going to be stepping into the ring as Colby's champion.

Thanks,
Jason

 

Still Hanging On

Jason and Amanda live at some distance from us with no family support near enough to make a difference so my husband and I decided that I would go to be with them as they walk out this journey. I made the journey at the beginning of June and have been attending their appointments with them since then.

June 20, 2013

Well, today we went for another ultrasound so it is time for an update. Colby is still fighting for life. We could see him waving his arms and practicing his breathing. Not long ago Amanda felt him do a complete flip which is unusual for him. We are at 30 weeks now but he only weighs 1 lb. 3 oz. That represents growth of about 4-5 oz. since his last ultrasound 5 weeks ago. It looks as though he will be less than 2 pounds when he is born which is not unexpected. Pray for growth so he can withstand the rigours of labour and delivery.

Amanda is doing well physically...no signs of pre-eclampsia. Emotionally, we are all feeling somewhat exhausted. It is difficult living on the knife edge of not knowing when Amanda will go into labour. God is good. On the days when we need a little encouragement, someone sends an email and we are blessed. When our faith waivers, He draws our attention to another of His miracles. Thanks for keeping us in your prayers.

Blessings,
Robin

Here is a portion of Jason's update written on the same day...

I am encouraged to know that Colby is still fighting, but the details of this impending medical doom have been weighing on me this morning as I grasp to understand the situation from a medical perspective.  Despite this, clarity comes from seeing this from the right perspective and God gives hope for the miraculous when it is needed. 

In my ponderings and random internet searches, I ended up stumbling across a blog about a little girl who supposedly has full Triploidy and yet has miraculously pushed beyond the odds.  The latest photo of her with her family was from Disneyland in November last year.  At that point, she was 10 years old.  There seems to be some discussion regarding whether or not this is truly a full Triploidy case or possibly a misdiagnosed Mosaic since medical literature does not mention this case and diagnosis only provides a probability analysis because not all cells can be checked.

Either way, it makes no difference.  When I turned to my Faith and needed validation of my decision to do so, this girl's story is what fell into my lap.  That is confirmation enough for me and whether or not it is the same as our situation, there is nothing that says that I cannot have faith for a miracle like this!  It is time to finish this journey strong and to push through.  Even though we are exhausted, I feel a sense of anticipation and an expectation that something is about to happen.  Colby's destiny will soon be made known and we will see his impact push out well beyond where his little arms can reach. 

As always, thank you so much for your support and prayers.  We, as a family, are truly blessed to have such amazing people around us. 

Jason

The Verdict is In

They had to wait a little longer to get the full results from the amniocentesis. The question of whether Colby had Mosaic Triploidy or Full Triploidy was still up in the air.

May, 17, 2013

We have just received the remainder of the diagnosis information that we were waiting for.  We now have about as complete a picture as we can get as well as an understanding of what we can expect in the coming days from a medical point of view.  This, of course, does not reflect what we can expect from a "God" point of view. 

The details are as follows.  Of all the cells that the genetics lab has tested based on the amniocentesis, all showed the presence of Triploidy.  While this does not necessarily mean that we can rule out Mosaic Triploidy, it does mean that approximately 62% of Colby's body is affected for sure and the remainder cannot be confirmed, but is likely to be the same. 

At this point, Amanda is receiving regular checkups to monitor her health.  High blood pressure is commonly associated with Triploidy and will be monitored closely.  Colby is falling farther behind in his growth relative to where he should be.  Right now, he is approximately five weeks behind, but this varies throughout the body.  We have also received the results from the fetal echocardiograph  which revealed a sizable hole in Colby's heart.  While we have been assured that this does not cause him any pain or complications right now, it is something that will require surgery if he survives.   This is normally performed around three to four months of age. 

As it stands, the Doctors expect that Colby will follow the statistics.  They don't anticipate his survival. It is really a matter of how far he will go before his body gives out.  Every day that he earns right now is against all odds.  He has been a fighter, but quite literally, it is all up to God now as to whether or not he confounds medical science. 

In the meantime, we wait, pray, and make preparations for what the doctors expect to see, but with hope that they won't be needed. 

Thank you everyone for believing with us.  Colby has a destiny and a purpose that is still to be accomplished.  I firmly believe he would not be with us still if the case were otherwise.  As a father, I would give anything to take this burden off of his shoulders, but I cannot.  It makes me wonder at how hard it must have been for God, as a Father, to watch Jesus suffer and die for us.  It was no small sacrifice on His part to give up His son so that we might have life.  The impact of this is strikingly profound when you consider that God suffered the sorrow and grief of losing a son so that I would not have to lose mine.  Regardless of what happens, my son is not lost.  He will either be with me here or with Jesus until I come to meet him.  In that, I rest my hope and owe my eternal gratitude.   

Until such time as God's glory reveals itself, I will keep cheering Colby on!  To quote the prayer of my daughter, Evaine, "Go, Baby, go!  Am-em."

Jason

The Hard Truth

Even though the amniocentesis results were hard to hear, both Jason and Amanda were glad to have a definitive diagnosis at last. Of course, that diagnosis generated even more questions and a flurry of research.  There were some dark days as they adjusted to the heartbreaking realities they were faced with...

May 5, 2013


We have received results back from the amniocentesis.  We were not expecting them this soon.  The news was not what we expected, but also wasn't good.  Our child does not have a trisomy based syndrome such as Edward or Down syndrome whereby one chromosome is duplicated creating three where there should be two for a total of 47.  Instead our boy has what is known as Triploidy which is when all of the baby's chromosomes are duplicated on one side creating three full sets of chromosomes instead of two (69 instead of the usual 46).  This is based on a partial analysis.  The full analysis will take another couple of weeks at which point we will know if it is Triploidy or Mosaic Triploidy which is where there is only part of a third set of chromosomes.

This is very rare and even more rare as most babies with Triploidy end in miscarriage.  The fact that he has made it this far is surprising.  That being said, full Triploidy and life are not possible in coexistence.  The longest recorded life of any child with full Triploidy is ten and a half months.  The oldest living people with Mosaic Triploidy are currently in their twenties and there have only been 50 or so cases in the world.  Children with Mosaic Triploidy that survive are born with a range of mild to severe physical and mental handicaps. 

Now we know what it is we face.  The doctors know and it is documented.  There is no way to wish or argue the situation away or to tell ourselves later that any miracles that we encounter in this situation could have been due to incorrect diagnosis or false information.  It is miracle or bust. 

As said before, we are believing for life for our child.  That means full and unhindered life with a perfect genetic code.  Please continue to pray and believe with us as we work through this.  Please pray for peace, hope, and courage for Amanda and myself as we attempt to continue on with our daily tasks in the face of this situation.

Thanks,
Jason

May 6, 2013

It occurred to me that while a few of you know our little guy's name, most do not.  His name is Colby Rafe Livingston.  As some of you may know, I put a lot of value on the meaning of a name because every time we speak it, we are declaring it over that person.  When you have a revelation of this, it changes the way you look at names.  A great example of this is my daughter, Evaine, whose name means "Life".  Anyone who has met my daughter can testify to the fact that she has become the embodiment of her name.

While Colby does not have much significance in regards to its meaning, the name Rafe means "God has healed" and "Wolf Council/Wolf Shield".  In truth, while we are believing for a miracle and we are holding fast to the promise of victory in his body, only God truly knows how much time we will have with our son.  All that to say, I would like people have the chance to know him by his name and to support him by name.

Again, thank you all so much for your support in this.  It has given me strength beyond my limits and helped me to stand when I have no strength.

Jason

The Journey Continues

On the Doctor's recommendation, Jason and Amanda went to speak with a Genetic Counsellor about their situation. All of the markers showing on the ultrasounds indicated the possibility of either Downs Syndrome or Edwards Syndrome. Terminating the pregnancy was an option they refused to consider and they were encouraged to go for an amniocentesis to determine exactly what they were dealing with...
 

May 1, 2013

Just another update.  The amniocentesis is happening late this morning followed by a fetal MRI later on.  There is some risk of prematurely inducing labour with the amniocentesis (0.4%) so please be praying and believing with us that the procedure will go smoothly and will have no adverse effects on the pregnancy. 

Please understand that even if the amnio comes back with negative results, we are believing that it is God's heart for our son to be healthy and whole at the end of all of this regardless of what the situation or data tells us. 

God is the giver of good gifts, not bad ones.  He has a heart for full and abundant life in every one of His creations and He fearfully and wonderfully crafts each one accordingly.  This means that the current situation and any negative data that we may receive during this process is contrary to His designs for our son and it is His will to change this situation to align it with His truth.    Thank you for standing with us in this. 

Jason

Into the Valley

Life is a series of highs and lows. We don't live on the mountain tops though it's good to remember them when we are in the midst of the valleys. Recent events in my family have brought us into one of those deep and difficult places where our greatest comfort is in knowing that we are not alone. True to His promises, God has been with us every step of the way. We've also been encouraged to know that others have passed this way before us. It is in the hope that our experiences might be an encouragement to those who find themselves following us that I have decided to share our journey here.

My son, Jason, and his wife, Amanda, are expecting their second child. Their daughter, Evaine, is two years old. Back in April they went for their 20 week ultrasound and were thrilled to discover that they were having a boy. However, the doctor expressed some concerns over some of the things he noted on that ultrasound and they were asked to return twice more for more detailed exams. They kept hoping that it was all a mistake and that the next ultrasound would show that all was well. Instead, each successive ultrasound caused even greater concern.

We belong to a praying community and Jason decided that they needed as much support as we could give. He sent out an email asking us to join them in praying and has been sending out updates ever since. Ultimately, they discovered that their son has a genetic disorder called Triploidy. I have asked them for permission to share their story and some of his emails here and so, I will begin at the beginning...

April 26

Our followup ultrasound occurred yesterday and we spoke with the doctor afterwards so I thought I would pass on an update of our little baby's situation.  In short, there is essentially no positive change.  This ultrasound still shows that the baby is small in the limbs, fingers, and body, but at least he was moving a bit more and one of the doctors thought he saw a second umbilical artery, although he was the only one to think so and was not as experienced in carrying out ultrasound work.  I hope he was seeing something in the spirit. 

The list of markers and issues continues to grow and now includes a single umbilical artery, skeletal displasia/intrauterine growth restriction, communication between two of the chambers in the heart, micrognathia, and echogenic bowel.  I may have left something out, but my mind is not what it once was.  I will not go into the details of each of these things as it would take too long and is hard for me to think about right now. 

It appears, at this point, that the child has some form of genetic/chromosomal issue.  The question is really which one.  We are attempting to schedule an amniocentesis for early next week (hopefully Monday) which will give us more information on what it might be.  The baby is also being scheduled for a fetal echocardiogram and an MRI to look at the heart, bones, and brain. 

All in all, this is a very dark situation that could use some serious miracle power.  Thank you so much for praying for us and believing with us.  I will keep you updated as things progress. 

Jason